Could they be missing it?

[ToeKnee]

Hello All I pray you are all well 🙏
I have a long history of issues and needed a little guidance if I should continue down seeking ALS as a diagnosis. I am 38 year old male who was physically fit construction worker now for the past 3 years have been mostly bed bound. My history is two prior lumbar fusions and late lyne dissease that maybe chronic I'm unsure of the truth in it at this point as I have treated pretty aggressively. I have had foot drop with fatigue since my surgery in 2017 but things slowly progressed to twitching in left anterior calf to both legs with weekness I can no longer walk well and I'm using a wheel chair I have noticeable atrophy in the calfs now. In 2019 I recived my first EMG it came back with rediculpothy. 2020 Emg Radiculopy, 2021 the upper extremities were clean and just recently 2022 another lower emg that shows ridiculopathy with out changes from previous one in 2021. I don't understand how I get sever twitching and muscle activation lose and wondered can they be wrong 😕 can 3 neurologist and one neuromuscular doctor be missing it? I have moments of complete paralysis only to regain less strength. I have also started twitching more in tricept and biceps.

I thank you all for your time as I'm sure you get alot of these and feel terrible adding to yet more questions like this. Tonight my legs and toes are buzzing and twitching and I just needed to reach out.

I also have an inability to engage upper left thoracic muscles, Lower left abdominal muscles and difficult to sleep on my left side as my shoulder has lost strength. Other symptoms keeping I'll list here.

2 Month prior
Huge bouts of leg pain and neuropathy that required oxycodone to relife.
These prior months I was evaluated at westchester medical center and found no structural issues with good neuro exam.

9/25/22
Huge electrical storm in legs lost strength to stand unassited. Effected mental health as i lost connection to the muscles at this time. These slowly improved enough to abulate to bathroom this flare also increase abdominal weaknees.

11/19/2022
Heel pain numbness, Knees weak and feel unstable unable to control, Girdle spasticity, low back pain over previous fusion also spasticity, twitching legs, disconnect to left side muscles from rib to groin no longer supportive. Feels like unimaginable torture body is shutting down. Disconnect from lower abdominal left testical and bladder is difficult to start and stop. Standing and walking is beyond what I can even describe.

I belive all these symptoms have greatly amplified and have been ongoing since a major flare on November 7th when Hbot and IV rocephin was combined with Clarithromycin,Rifampin. That day my nerves from my knees down to my heels throbbed and buzzed and finally let go leaving me with extream weakness almost as if both ankles were broken. The ankles have improved Slightly but continued to be weak enough that walking on them and trying to gain support from my knees is extreamly difficult. I am still mostly bed bound. I recently visited the hospital since the empty feeling and dissconect in left lower abdominal and left testical is getting bad without improvement I feared of ALS and lost my sanity. After physical evaluation from neurology Full MRI,Lower abdominal and testical ultrasound nothing emergent was found and I was told that perhaps it was nerve damage from previous surgery and to continue antibiotics and followup out paitent with Neuro and psychiatrist.. I was Also given a walker and was able to walk with a physical therapist support I was was told they don't see anything but failure to engage in physical rehabilitation.

Supplements started today 11/19/2022
With continued plan of antibiotics.
Notice improvement with supplements reduction in Psychiatric issues and pain.

11/20/22
Woke at 7am took medication all muscles ligaments hurt, twitch, knees hurt extreamly bad. Weakness in arms and legs. Pain 8+

Slightly better sense of smell and cognition decreased pain and weakness.

Flare up
Pain,spasms,twitching,pulling,weakness in legs at 6:25pm

11/21/22
Calf muscle hard twitching and lose if function and strength in ankles. The ankles feel sleep. My cognitive function has greatly improved.
Pain still persistent

11/22/22
7am
Lower abdominal and left testical dissconect feeling improved.
7:30am Legs still twitching cramping, Increase in Psychiatric issues, Sore calf muscles and strong pulling sensation in knees, buzzing nerves in legs, Achilles weakness, feeling of ankles painfully fall asleep. *Fear* panic attack
9am muscle pain feels like locked muscles in quadriceps also twitching in those areas. Ankle pain on top right foot.
11:30am twitching increase and ankle weakness feels asleep.
12:30am emotional crash thinking ALS is going to kill me. Knee pain at muscle location, increased twitching x10
2pm Eletrical Strom in legs ankle preasure weakness.

Increase in symptoms around one hour after antibiotics.

9pm legs burning twitching cramping bad
Stopped abx.

11/23/22
6am
Anxiousness, restlessness, Lower abdominal cramp and weakness. Ankles still feeling asleep and weak down Achilles. Very emotional crying spells.
2:30pm
Leg muscle pain extream calfs ankles knees thighs groin hips lower abdominal

10pm ankle internal numbness and sleep feeling relived some.

11/24/22

2:10pm - 4pm huge flare ankle weakness numbess. Then made to stand up and move a few steps assisted then mental break after realizing how bad I am.

6pm flareup neuro storm buzzing pressure crawling tingling ankles extremely weak and less responsive. I lost support in knees, hips they hurt laying.

Lasted until 8:20pm

11/25/22
Numbness tingling burning pricking pain in legs left inner calf foot weakness buzzing netve. Right ankle less weak feeling. Hands slightly burn tingle

11/26/22
Leg mussels pulling at joints twitching with any use and ankles flared up feel weak.cant stand up weight in knees collapse shake and ankles hurt and can't walk. Mental health is horrible thinking als als. Feet swetting sensory changes.
1pm woke in total fear amplified feeling of numbness pain in ankles and increased weakness they feel heavy and drop increase lower abdominal cramling. I have no appetite and losing weight maybe from depression.
2pm nerves in the acillies tendon are hurting, buzzing, twitching both my ankles hurt. Deep muscle tension pain around knees in quads.
Break in symptoms 7pm to 8
Symptoms restart 9pm tingling crawling popping burning Aching. 930pm knee pain starting

11/27/22
Repeat of all the same symptoms some moments less severe than others. Also twitching in left tricept now. Twitching buzzing pain restless leg extream
Flare up 6pm spasticity joint pain buzzing twitching. Very bad pain right ankle outside knee feels like nerve pain severe restless legs
750pm break of heavy symptons
*Frequent urination for days*
11pm increasing swelling pressure pain in both acillies 12pm increased.
12:20pm slightly decreasing but throat is a bit weak feeling maybe just dry.

11/29/22
Less ankle weakness and psychosis still twitching. Can't take long conversation or stimuli my legs cramp up and feel dussconbected.

3am swet drenched, had to pee a lot and feel depersonalization, derealization, anxiety, ectream weakness hard to lift head and arms.

11/30/22
7:30am severe legs spasm/cramping can't stand on ankles around achiles they feel dead or detached more so in right leg now.legs tingle arm falls alseep, feeling hopeless.

12/12/22
Back to pain spasm neuropathy burning
12:30 Flare both mental body
5pm toe twitching
6pm nerve inflammation pain Achilles ice helps a bit

(Break in symptom keeping)

12/15/22
Magor Leg fasticulations fast rhythmic
Legs nerves anterior calf than than others buzzing hard turning off and hurting tingling crawling (burning slight) muscle pain 8+
Quadricep weakness pain above knee.
11pm twitching stopped

12/16/22
Twitingbin anterior calf muscles crawling sensation restless leg sensation. I can't setup to walk without my legs going crazy with twitching and spacisity.
Scared of ALS

12/17/22
Slightly less twitching and crawling in legs but buzzing tingling in nerves in the areas of where weakness is also in feet and siles now.

 

[lgelb]

I see no reason to worry that anyone missed ALS. I would have suggested that your spine be rechecked but you report a recent MRI. Still, a second opinion at a major spine center would do no harm. And unexplained urinary problems suggest a visit to a urologist.

From what I gather, you may have recently stopped the aggressive abx for Lyme that can have their own serious side effects, especially if taken for months or years. So there is a decent chance that when off them, things can improve.

I can certainly understand why you would feel depressed and anxious about all this and would suggest counseling while you rule out treatable physical problems.

 

[ToeKnee]

Thank you for you prompt response I appreciate it so much 🙏

 

[Clearwater AL]

ToeKnee, not to pile on but to consider...

Your long dated chronicle after… beginning in 2017 seems you are somewhat
over focused/concerned with your health. Maybe with reason.

You’ve got great re-call or have kept a diary. Your medical terminology is above average,
possibly from extensive internet research or a medical background.

Wrapping it all, really suggests you seriously consider Health Anxiety counseling
until your doctors help you out of the several issues you have. Being only 38 years old
you have so much more of life ahead. Hope for you it happens.

 

[affected]

Oh I'm truly sorry for what you are going through. Those antibiotic treatments are rugged!
There truly is nothing that even comes close to ALS in what you describe.
We are not doctors, but we know ALS really well. I am so glad this is not ALS, but I know that means you are still left struggling to return to health. All the best.

 

[ToeKnee]

Thank you Affected and all who have responded.
I have since increased some of my health anxiety treatment strategies as im mostly bed locked/ridden I think from bring nervous of how weak I am and the feet drop out. I still worry because of the severe weakness in my legs that hurts my knees and my anterior calf muscles twitching all day and have just atrophied unfortunately . I think forums like this and people like all of you are so valuable to people with concerns and just wanted to thank you all so much and wish you all a beautiful holiday season 🫂 🤗.

Thank you again for your time I will keep you updated as I think maybe FND will be diagnosed si ce it was mentioned in the past. I honestly just want enough strength and muscle activation back in my legs to walk right now trying g to make a calf muscle they just have visible twitching fibrillations 😔.

 

[Nikki J]

You will get atrophy in perfectly healthy muscles from disuse. A classic example is someone who had a fracture in an extremity that was casted. When the cast is removed it is usual to see atrophy.

FND is treatable and usually can be cured. I have posted several times in this subforum links to information on FND search this subforum for functional neurological disorder as well as fnd posts by me. Mass General where my neurologist is has an amazing fnd clinic run by David Perez. Google David Perez MD MGH

 

[ToeKnee]

Thank you Nikki J ❤️ 🙏

 

[affected]

You need to go see your doctors and get help.

Please though, stop coming here until you update with a clear diagnosis.
All the best, you can return to full health, but laying in bed won't do that for you.

 

[MJT]

You are fine

 

[ToeKnee]

Hey everyone unfortunately I'm waiting on my neurologist to check a new emg that looks rather different then previous ones but not by much considering I had my first emg in 2019. I will post it here for everyone and so far my neurologist believes my inability to abulate well is due to pain over weakness but with regard to the increase in visual fasticulations weakness and my concern is reffering a neuromuscular doctor. If any one is interested in seeing prior emg studies from 2019 2020 let me know and thanks for your time.

 

[affected]

let us know what your neurologist says. it could indicate something like GBS which is treatable

 

[ToeKnee]

So came to the ER because weakness and twitching was progressing to arms and neck. At arrival reflexes are hypo and suspected guillian barre but next day reflexes are hyper no babiski clonus not seen but very hyper reflexes. They did csf found protein level 135 but non specific to them. They tested lyme ana and everything else wile I'm laying here twitching like crazy they can only assume as of now ALS and will send me to a specialist. My fingers twitch I can't walk any more and lost 20lbs I think the only thing preventing the diagnosis at this point is changing reflexes and severity of relapse episodes not as gradual as expected. Previously I had seen a neuromuscular doctor when ankle weakness eccoured and had hypo reflex at the time an no other clinical besides weakness she reviewed past emg abd compared all and concluded absolutely no signs of anything but rediculpothy but she only seen me briefly and as a consult.

So I'm in hospital still and my throat neck area is weaker twitching is crazy visual and effects hands arms now. I'm not sure what else to think as the whole neuro team just says ALS but wants to try a few things first 🤔 somthing for calcium potassium channels to see if that helps fasticulations but they miss muscle function loss and clinical weakness. I also have neural pain in my legs that confuses them as I had a prior back surgery so on pain medication. It is just a big mess but what ever this is I'm progressing rather quickly now.

I'll keep you updated if you want you can add suggestions or anything. ❤️

 

[Bestfriends14]

On what findings does the whole neuro team believe that you have ALS? Your symptoms and EMG, plus the opinion of the neuromuscular doc, say no ALS. Did they say why they believe you have ALS?

 

[ToeKnee]

Yea they have my history starting with left foot drop and gradual decrease in function and they say that ALS is a diagnosis of exclusion. They ran a bunch of testing and found a few non specific things they originally say pls but then the reflexes didn't fit because they change. So they can't figure out the extream fasticulations and clinical weakness loss of muscle control. They left it with a likely case if ALS but need a specialist to rule out other things.